Patient stories

When Kennedy was diagnosed with a rare but serious condition called moyamoya disease, her parents knew they had to fight for her. Their journey brought them from Texas to Dr. Edward Smith and the Moyamoya Disease Program at Boston Children’s Hospital.

When Madelyn was 5 months old, she contracted an illness that her parents and pediatrician thought was just a bad virus. But it wouldn’t go away, and a visit to the ER led to a rare brain diagnosis and an urgent procedure at Boston Children’s Hospital.

Matty Siegrist was having trouble walking and talking because of cavernous malformations, a genetic condition he shares with his dad. After surgery to remove a large malformation, Matty is back to running and playing like a typical two-year-old.

What started out as a hard time concentrating turned into a rare diagnosis for Moyamoya disease by Boston Children’s physicians. Read about 8 year old Carolyn’s experiences with surgical treatment and recovery.

Bryan Thomas was rushed to the emergency room with a bleeding arteriovenous malformation (AVM) in his brain. Quick but careful teamwork defused the “ticking time bomb” — safely removing the AVM and saving his life.

Eight-year-old twins Ryan and Tyler had moyamoya disease on both sides of their brains. Ryan had already had two strokes as a result. Both boys underwent an operation called pial synangiosis that restored blood flow to their brains — and with it their future.

A prenatal ultrasound found a vein of Galen malformation in Alex Martin’s brain that threatened to compromise his heart function. Alex’s parents drive 17 hours from South Carolina for his delivery and eventual treatment — guided by a 3D-printed model of his malformed vessels.

Wyatt Schlaht and his dad were driving to hockey practice when he suddenly had a seizure. A cavernous malformation, a mass of blood vessels in his brain, had caused a large blood clot. Neurosurgeons at Boston Children’s used stereotactic navigation — an image-guided GPS-like system — to safely remove the clot and the malformation. Wyatt is now back on the ice.

Two years ago, Adam Stedman had a seizure out of the blue. It was caused by an arteriovenous malformation, or AVM, a tangle of abnormally connected arteries and veins. His neurosurgeon, Ed Smith, MD, wanted to rehearse the tricky operation to remove it in advance. That’s how Adam became one of the first patients to have his blood-vessel anatomy reproduced through 3D printing technology. His one-year follow-up angiogram, at age 17, was completely normal.

Pedaling her stationary bike, 14-year-old Carly Coughlin felt a sharp pain in her head and quickly became lethargic and unresponsive, in extreme pain. An arteriovenous malformation (AVM) had burst and hemorrhaged in her brain. Medflighted to Boston from Cape Cod, Carly had the AVM safely removed. Eight weeks later, with well wishes from Tom Brady, she was back in school with aspirations to be a neurosurgeon.

Calvin Steede suddenly found that his arms weren’t working. He had suffered a minor stroke, a complication of sickle cell disease. It was the start of a journey that led to him having surgery for moyamoya disease, another potential complication of sickle cell disease that may have caused the stroke. Calvin, 11, continues to be monitored at home in Bermuda.

When Yousef was two days old, a doctor burst into his mother’s hospital room in Kuwait City to tell her that he had high pressure in his heart. An echo showed nothing in his heart, but found a vein of Galen malformation deep in his brain. Two hospitals in France and England said they could operate only after his first birthday. Boston Children’s treated him much sooner, with a catheter-based technique.

Rolensky was flown from Haiti to Boston Children’s with a failing heart. But there was nothing structurally wrong with his heart. Instead, he had a rare blood vessel abnormality in his brain: a vein of Galen malformation. A procedure called embolization closed it up and relieved the stress on his heart.

Boston Children's Hospital has been named the #1 children's hospital in the nation by U.S. News and World Report for the fifth year in a row! It's an honor that we could not have achieved without you. On behalf of every member of our Boston Children's team, thank you for inspiring us to be bolder, dream bigger, and make the impossible possible for our patients and families.